E
Public Comment Summary

During the workshop, a number of questions and comments were emailed to the panelists from online participants. Due to time limitations, many of the questions posed were not addressed. This appendix contains a list of questions asked during each session. The questions have been anno­tated, but they, along with any comments submitted during the workshop, can be found in their entirety in the committee’s Public Access File.1

SURVEILLANCE, SPECTRUM, AND BURDEN OF TICK-BORNE DISEASES

  • Why is Borrelia burgdorferi the only recognized cause of Lyme dis­ease in the United States?

  • Are there standard criteria for a Lyme disease diagnosis?

1

Written materials submitted to a study committee by external sources are listed in the project’s Public Access File and can be made available to the public upon request. Contact the Public Access Records Office (PARO) for a copy of the list and to obtain copies of the materials. Copies of materials are free to government employees and educators. Please send an email or call PARO to make a request or an inquiry.

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E Public Comment Summary During the workshop, a number of questions and comments were emailed to the panelists from online participants. Due to time limitations, many of the questions posed were not addressed. This appendix contains a list of questions asked during each session. The questions have been anno- tated, but they, along with any comments submitted during the workshop, can be found in their entirety in the committee’s Public Access File.1 SURVEILLANCE, SPECTRUM, AND BURDEN OF TICK-BORNE DISEASES • Why is Borrelia burgdorferi the only recognized cause of Lyme dis- ease in the United States? • Are there standard criteria for a Lyme disease diagnosis? 1 Written materials submitted to a study committee by external sources are listed in the project’s Public Access File and can be made available to the public upon request. Contact the Public Access Records Office (PARO) for a copy of the list and to obtain copies of the materials. Copies of materials are free to government employees and educators. Please send an email or call PARO to make a request or an inquiry. Public Access Records Office The National Academies Washington, DC 20001 Tel: 202.334.3543 FAX: 202.334.2158 E-mail: paro@nas.edu 525

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526 CRITICAL RESEARCH NEEDS IN TICK-BORNE DISEASES • Is there a possibility of chronic Lyme disease, and if so, what data is there to support the existence of chronic or persistent Lyme disease? What symptoms could describe such a condition? • In regards to RMSF case studies are other tick-borne infections—for example, Bartonella, Babesia, Mycoplasma—investigated as well? If not, is there an area where retrospective analysis could be helpful, particularly in fatal cases? • Why is late-stage Lyme not considered a disability according to SSDI guidelines? • Has anyone looked at the possibility of ongoing Babesia infection due to Borrelia coinfection? • Is there a connection between acute or chronic Lyme disease and infection with Bartonella or a Bartonella-like organisms? • If a patient has Lyme and Babesia, do you think it could compli- cate eradication of the diseases and warrant further antibiotics/ antimalarials? • What is the benefit of prophylactic antibiotic therapy, and how ef- fective would such therapy be in preventing disease? • What is being done to update the materials on tick-borne diseases taught to military personnel? • Would data from alternative sources (for example, home health care workers) be of value to physicians and researchers in accurately recording cases and disease symptoms? • How are researchers supposed to investigate a disease without proper funding when money is needed to begin the initial investiga- tions (research paradox)? • What efforts would you suggest to increase communication between researchers and physicians? AT-RISK POPULATIONS AND HUMAN FACE OF TICK-BORNE DISEASES • Does Lyme disease have the potential to cause postural orthostatic tachycardia syndrome (POTS)? • Has any research been done to investigate possible connections be- tween Lyme disease and Alzheimer’s disease? • What genetic characteristics make one more susceptible to Lyme disease? • Are there any strains of Babesia that, given current lab techniques, are only able to be clinically diagnosed? • What services are available to help support families suffering from Lyme disease?

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527 APPENDIX E • What research is being done regarding the relationship between Lyme disease and movement disorders? DIAGNOSTICS AND DIAGNOSIS • Why is IGM only useful in early disease? • Why does IGM seem to cycle between positive and negative during treatment of other co-infections and returning Lyme symptoms? Why is this not clinically relevant to diagnostics? • Should children be immediately screened for Lyme disease following a tick bite? • What clinical markers are used to diagnosis “post Lyme”? Is the diagnosis made on the basis that any level of treatment means eradi- cation of the pathogen? • Should patients with post-treatment Lyme disease syndrome still test positive for Borrelia DNA? If not, what diagnosis would be given to a person who is post-treatment but still positive for Borrelia? • How can you be certain that these patients are free of Borrelia burg- dorferi, even when it is known that many people and animals have been sero-negative despite still having active disease? • Using a SPECT scan of the brain, can you distinguish global hy- poperfusion (brain damage) and cognitive dysfunction caused by tick-borne diseases versus that caused by long-term excessive medications? • Do changes in the immune system alter the effectiveness of antibi- otic treatment when recommended dosages are bacteriostatic not bactericidal? • Is there any way to determine which stage of Lyme disease a patient with chronic Lyme disease is in whether through test results or the chronological progression of symptoms? • When will the gap in testing knowledge be addressed? When will the weight of the evidence be acknowledged? When will this disease be robustly studied scientifically, without political or other interference? • What factors effect the development of symptoms and diagnosis of Lyme disease? • What tests are currently available besides the Western blot for Lyme disease patients and their physicians to more accurately determine the elimination of Borrelia after a course of antibiotic treatment?

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528 CRITICAL RESEARCH NEEDS IN TICK-BORNE DISEASES EMERGING INFECTIONS, TICK BIOLOGY, AND HOST–VECTOR INTERACTIONS • How come people can have a negative Lyme disease result in the UK and yet have a positive Lyme disease test in the United States? • Do ticks remain infectious after biting someone? • Have you done any studies on biofilms as a way for B. burgdorferi to sequester itself? PATHOGENESIS • How long must a tick be attached to transmit Borrelia? • Can you explain tick regurgitation and pathogenic infection on im- proper removal or agitation? • What research has been done to investigate intracellular Borrelia infection? • Can ongoing infection be the result of residual primary infection after treatment? • If no toxins [are] secreted from B. burgdorferi, why do patients experience a Jarish-Herxheimer reaction to treatment? • How do the explanations of Borrelia antibodies affect interpretation of Elisa and Western blot testing? • Is there a possibility of sexual transmission of Lyme disease? Are there any studies being done to support or disprove this? SCIENCE, SOCIETY, AND DISEASE • For medical and psychological communities, what can be done to educate those who are in a position to encounter Lyme as a valid differential diagnoses? If mental health services have a Surgeon Gen- eral Statement that translates to codes of ethics for the profession, is it possible that Lyme could be named as another such diversity group for which ethical consideration is merited? Currently, what propaganda is being downloaded to institutions of medicine and psychology, M.D.s, psychiatric and mental health services providers, educational personnel, etc., that promotes the well-being of those who suffer with Lyme? • Can the CDC provide funding at the public grade school levels to educate staff and students on prevention techniques? • What public health message should be relied to the public regarding Lyme disease?

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529 APPENDIX E PREVENTION • What tests are currently available, besides the Western blot for Lyme disease patients and their physicians to help them more accurately determine whether the patient is completely cured of the infection after a course of antibiotic treatment even though the patient may still exhibit symptoms? • How can highly specific bands to Borrelia be used in current vaccine research and be excluded in diagnosis? • Are there any factors such as body scent that attracts ticks to certain individuals?

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